The TBI-QOL measurement system was developed with funding from the National Institutes of Health (National Institute of Child Health and Human Development /National Center for Medical Rehabilitation Research and the National institute of Neurological disorders and Stroke) and the National Institute on Disability and Rehabilitation Research to develop and validated a multifaceted system of measuring patient reported outcomes across a wide variety of functioning specifically targeted for individuals with TBI. Evaluation of the sentivity and responsiveness is currently being studied.

The measures were developed following all standards of development advanced by the PROMIS measurement scales. Twenty three areas of functioning are measured through Computer Adaptive Tests and/or short forms. Some scales are unique to the needs of individuals with TBI (e.g., resilience, grief and loss, mobility, independence) while other scales used PROMIS and Neuro-QOL items but recalibrated scores to optimize assessment within an TBI population (e.g., pain interference, depression, anxiety). These latter scores are linked directly to the PROMIS (PROMIS Instrument Link) or the Neuro-QOL measurement system (Neurological Quality of Life Instrument Link) to allow for direct comparison with PROMIS and Neuro-QOL scores except item administration has been enhanced for individuals with TBI.

Administration: Computer adaptive test (CAT) or short forms (SF). Currently, CATs are only available through the Assessment Center platform (www.assessmentcenter.net; contact TBI-QOL@udel.edu for access). SFs may be administered through Assessment Center, by paper and pencil, or may be entered into alternate electronic data capture systems.

Time: Variable depending on the number of domains assessed; CATs average 7 items (~2 minutes) each and SFs average 9 items (~3 minutes) each.

Ages: TBI-QOL measures were calibrated with adults only (ages 18 and older)

Cost: Free to investigators/clinicians who sign a use agreement (available from TBI-QOL@udel.edu). Assessment Center is currently available free of charge, however a fee for use may be implemented in the near future.

Languages: TBI-QOL measures are currently available in English only.

Scoring

Standard scores are provided on a T metric (mean 50, SD 10) for all TBI-QOL CATs and SFs. CATs are scored automatically by Assessment Center. For SFs, raw (sum) scores must be computed and then converted to T-scores using lookup tables available through TBI-QOL@udel.edu.

In all cases, higher scores indicate more of the trait being measured (as indicated by the name of the bank). For example, higher scores on TBI-QOL Basic Mobility and TBI-QOL Positive Affect and Well-Being indicate better outcomes whereas higher scores on TBI-QOL Depression and TBI-QOL Fatigue indicate worse outcomes.

Rationale/Justification

Sport-Related Concussion Specific:

Advantages: the domains are appropriate for adults and concern specifically patients suffering from TBI.

Limitations: 1) does not consider not- complicated mTBI with negative neuroimaging (the majority of concussions). 2) consider only two groups: those who had been injured in the past 6 to 18 months and in the past 18 months to 3 years. Not tested for the acute phase and therefore has limited validation in the target.